Grammy's Update - day 6

Well it has been days since I've had an opportunity to write. For the benefit of those not following Deidre on Facebook or not on Hope's email list I'll need to try to recap the past several days. Ayden is 6 days old today!!! Each morning I thank God for another day with him! Things change so fast with him. Since you last heard from me we have experienced thinking he wouldn't make it thru the night (this dr. is not an optimistic sort) to good numbers with everything else in between. Things that have been done include: adjusting the Cather, changing the circuit from the ECMO (life support)-he was off life support 1 1/2 mins., exploratory procedure looking for the bleeder, going in the chest looking for clots, cleaning the chest tube, & I'm sure I'm forgetting somethings. Things get blurred... His kidneys are not functioning. Different diuretics have been tried & they have tried drawing fluid from him. Yesterday was the first time we thought this had turned around but apparently not. A kidney specialist is now among Ayden's drs. and they may have to do some form of dialysis. I don't know for sure what this means because days ago when this was becoming a greater concern what I understood is dialysis is notreversible& would mean pending transplant. Perhaps having ECMO do this avoids this I don't know. Pray for his little kidneys too. He is swollen. Doesn't look like the little boy we met on Saturday. He has a halo of swelling around the back of his head (this may be where the person who first drew an alien got the idea), his ears have looked like Shrek's-appearing more of a small funnel, he's had a swollen lip resembling a fighter-which he is, his body issimilarto an encased sausage link. He does not have bendable arms, appearing more like the doll he is. You would think his beauty would be hidden with all this but it is not!!!!! His nurses are wonderful. Today we are concentrating on the kidneys. The swelling has to go. They are keeping watch for neurological damage - this is a concern. The bleeder seems to have slowed but things like a clot could affect this also. Blood pressure has been top of the list. This seems to be going in the right direction. We were in the 30's, have gone into the 80's, and mostly now are staying in the 60's - which they are satisfied with. The cardiologist said 3 things are to blame for low blood pressure.....2 of them have to do directly with the heart itself which ECMO takes care of and the third is a lack of resistance in the arteries which can be caused by infection......he is on antibiotics.



We are doing ok. Deidre's blood pressure has been high. This is something she has trouble with in the past & a concern now. Pray for her physical healing. This is more in the way than anything else for her. Emotionally, she's a mom experiencing peace beyond understanding. She told me yesterday she can tell others are praying for her. Thank You!! Chris has been fighting allergies or a cold & has limited his time with his son. This is hard on him....he wants to be with him. I'm exhausted & swelling and thankful to be both. I just want to follow whatever path God has for us & all others connected to us :) I am convinced when something happens to someone if you know about it, it is part of a plan in your life too. That's just how ominous our God is! He works ALL things! I thank Him for the knowledge I have gained into the lives of others who have children going thru life & death things. I find myself feeling very arrogant, blind, & selfish in retrospect of this journey. Does the Spirit enlarge our compassion in trials? Yes! Does He make us more like Jesus when He does? Absolutely! I am thankful for all He is showing me, the lives of those hurting around me, the men & women who devote their lives to saving others, and for the body of Christ which is linked across the world & are at this point in time praying for us. Pray we minister even as we are ministered to. Ray & the boys are doing whatever they need to do and the children miss their mommy & want to be with Ayden.



I hope this makes each of you feel more in the loop. We cherish your love and prayers......especially when you aren't hearing from us because it is then I'm not able to update you.


hugs!!!


Gay & family